Saturday, April 30, 2011

It's gettin' heavy up in here

So...I've been putting off this post because it means I will have to talk about my dad's ALS diagnosis, a topic that totally makes me want to wretch. But I'm only delaying the inevitable, so whatever, let's just do this.

My dad has been diagnosed with ALS, commonly known as Lou Gehrig's disease, which is a rapidly progressing degenerative brain disease that affects the motor neurons, and to put it crudely, it suuuu-uuucks (meant to be read in a high-pitched sing-song voice). I was going to try to paraphrase the symptoms and describe the prognosis in the most sensitive way possible, but I finally gave up and decided to post the following excerpt from the ALS Association.

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.

Although the cause of ALS is not completely understood, the recent years have brought a wealth of new scientific understanding regarding the physiology of this disease. While there is not a cure or treatment today that halts or reverses ALS, there are significant devices and therapies that can manage the symptoms of ALS that help people maintain as much independence as possible and prolong survival. It is important to remember that ALS is a quite variable disease; no two people will have the same journey or experiences. There are medically documented cases of people in whom ALS ‘burns out,’ stops progressing or progresses at a very slow rate.

He was diagnosed back in March, and so many things have transpired since then. It's one of those things that happens to other families, not your own, and months later we are still devastated, overwhelmed, and unable to fully accept the reality of the situation. One of the hardest things about it is the uncertainty, which makes it really hard to plan for the future. Some people live 2 years with the disease, and a small percentage live 20 years or more. There is no way of knowing whether he will be in a wheelchair a year from now or if it will take many years for his body to break down.

Whatever the case, they plan on selling the home that we grew up in, among other things, and it is likely that my dad will stop working as a full time home builder in the next month or so. We are in the process of organizing several fundraising efforts so that they will be able to live, pay high insurance premiums, afford alternative treatments that insurance will not cover, and hopefully raise enough that they can go on some fun trips while dad can still get around.

My mom is putting on a huge fundraiser at the end of May, so I will be heading to Peoria for a few days to help out and spend some time with my family. I am trying to finance a family trip to Disneyworld for the end of August so that the boys can have a magical vacation with their grandpa, so I have reopened my Etsy shop and I'm busting my butt to fill orders after the kids go to bed at night. I am also sending more designs to PaperBox Press, so if you know anyone looking for party invitations, birth announcements or stationary, send them my way, would ya?

For more info and updates about dad's treatments and fundraising efforts or to donate, you can check out our Facebook page: I have also added a donation button to the top right side of my blog if anyone is so inclined. And if financial contributions ain't your bag, a few prayers thrown our way would be greatly appreciated, too.

Thanks so much for your support.



Patti Zantout said...

oh my dear sarah, how difficult this had to have been to write, and just when i thought i could cry no more, the waterworks began again. tracy is so lucky to have such an awesome family, not to mention such a wonderful wife! sheis the one i believe god chose especially to be there for tracy. we are all praying for you all. i love you, sweetie, mimi

Jordan said...

I am so sorry to hear this news. Watching a parent lose mental or phsyical funcutionality is so hard!!! Especially at such a young age. I will be praying for you and the strength for your family to handle this very tough situation!!! My sympathy is with you!